What the society provides

Members of the Society receive regular copies of ASPECTS, the TSSS newsletter. The title of the newsletter has been chosen to reflect its intention to cover all aspects of Turner Syndrome from day to day living, medical issues, research, education, social issues and more, within the newsletter.

Membership offers access to a membership network for social contact with others who share the same interest and concerns. Some local groups operate in areas of the UK

Each year the Society holds an annual conference and a number of open days around the country, sometimes with a theme i.e. Education & TS, HRT & TS, but always with a social element. Experience has shown that one of the most important needs of those with TS and their families is to have contact with others who share their experiences. Parents of young girls, adults and teenagers with TS benefit enormously from meeting each other at these events. Lasting friendships are formed, especially amongst the teenagers with TS.

TS is a ‘cradle to grave’ condition and as such requires medical treatment throughout life. The Society actively promotes the setting up of ‘one stop’ adult clinics for those with TS and the smooth transition from paediatric to adult clinic for teenagers with TS. Enquiries about TS from health, education, social service and other relevant professionals are welcomed. Promoting greater awareness of all aspects of TS amongst the general population is one of the aims of the Society.

Whether you are the parent of a newly diagnosed daughter with TS, a teenager or adult woman with TS, or pregnant with an in-utero diagnosis that the child you are carrying has TS, the Turner Syndrome Support Society is there to help you. Sometimes all you may need is to hear a friendly voice or to have the listening ear of someone who understands what living day to day with TS is like. You may just want information about TS, or have specific questions. This is the service that the Society aims to provide and if it cannot instantly provide an answer, it will certainly know someone who can. You may just want contact with another parent or adult with TS. By becoming a member, the TSSS can put you in touch with someone as close to where you live as possible or at least provide telephone or written contact via its contact network.

The TSSS is run by volunteers all closely involved with Turner Syndrome. Membership is not compulsory but offers further benefits and the fee enables TSSS to continue to offer support to others.

The Publication List gives details of information leaflets and guides that are available from the TSSS.